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FATHERS' GRIEF WHEN A
DISABLED CHILD DIES
JULIE D. WOOD a & ELIZABETH MILO a
a Kindering Center, Bellevue, Washington
Published online: 18 Jun 2010.
To cite this article: JULIE D. WOOD & ELIZABETH MILO (2001) FATHERS' GRIEF WHEN A
DISABLED CHILD DIES, Death Studies, 25:8, 635-661, DOI: 10.1080/713769895
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????????????????????????????????????????????????????
FATHERS’ GRIEF WHEN A DISABLED CHILD DIES
????????????????????????????????????????????????????
JULIE D.WOOD and ELIZABETH MILO
Kindering Center, Bellevue,Washington
This qualitative study examines the subjective experience of fathers’grief responses to the
death ofa child with a disability. Eight fathers were interviewed and completed the Grief
Experience Inventory (GEI). GEI results indicated that fathers did not differ signifi-
cantly from parents who lose a child in other ways. However, subjectively, fathers consis-
tently reported that their bereavement was marked by a ‘‘double loss’’: disability and then
death. Consistent withtheliteratureongenderdifferences in bereavement, fathers reported
greater emotional stoicism and used activity, rather than talk or social support, as a pri-
marycopingstrategy. Clinicalimplicationsforprofessionalsworkingwithgrievingmenor
with couples are discussed.
The death of a child is a devastating experience for any parent. The lit-
erature indicates that there are variables that affect how the loss of a
child is experienced. These variables include the age of the child, cir-
cumstances around the death, anticipatory grief preceding the death,
and gender of the parents.When a child with a developmental disability
dies, this loss may follow months or years of difficult parenting, which
may complicate the bereavement process. This study examines the un-
ique experience of fathers who have lost a child with a severe develop-
mental disability. The study uses a semi-structured interview, the Grief
Experience Inventory, and the methodology of qualitative research.
There is abundant literature on parenting a child with developmental
disabilities (Copley & Bodensteiner, 1987; Fortier & Wanless, 1984;
Received11July 2000; accepted 3 January 2001.
Research funded by a grant from the ARC of Washington State and the generous support of
Kindering Center, in Bellevue,Washington.
Address correspondence to Julie Diane Wood, Kindering Center, 16120 NE 8th Street,
Bellevue,WA 98008.
635

636
J. D.Wood and E. Milo
Olshansky, 1962; Young, 1977). Similarly there are many studies of be-
reavement following the loss of a child, and gender differences in grief
responses (Drenovsky, 1994; Huntfield, Mourik, Tibboel, & Passchier,
1996; Kavanaugh, 1997; Sanders, 1978). However, little is written about
parents’ reactions to the two-fold loss: first, learning that your child has
a disability, and then losing that child to death.
Milo (1997, in press) examined mothers’ responses to the life and
death of a child with severe developmental disabilities using both quali-
tative and quantitative assessments. The mothers’ study found that
mothers usedcognitive coping strategies to identify meaning andbenefit
in the life and death of their children. They coped with their loss with
strategies that helped them re-establish their belief that the world is pre-
dictable, meaningful and benevolent.Their experience in parenting and
then losing a special needs child was the catalyst for major shifts in their
priorities, worldview, and sense of identity. Several mothers in the study
reported that, while parenting and then losing a developmentally de-
layed child was the worst experience of their lives, it was also the most
defining experience of their livesöone that they would never wish to
give up.
Rooted in clinical experience and literature on men and grief, we as-
sume that a father’s response to losing a special needs child will be differ-
ent than a mother’s. Several studies confirm what we intuitively know:
men and women in their roles as mothers and fathers have different
grieving processes.These differences pertaintotheir internal timetables,
the reported intensity of their grief, and the subsequent marital conflict
that may occur at a time that calls for the support of each other.
A number of studies comparing the influence of gender upon grief
following the death of a child (regardless of child’s age or cause of death)
report that mothers grieve more intensely and longer than fathers
(Kavanaugh, 1997; Lang & Gottleib, 1993; Moriarity et al., 1996;
Schwab,1996;Thomas & Striegel,1993,1995; Zeanah et al.,1995). Vance
et al. (1995) found that whereas fathers show briefer and less intense an-
xiety and depression reactions than mothers, they more often used alco-
hol to cope following the death of a child. Drenovsky (1994) found that
fathers were more likely to feel that someone must be punished for their
child’s death. Mothers were more likely to feel anger toward their de-
ceased child.
Huntfield et al. (1996) reported one exception to this general trend in
gender differences. Using the Perinatal Grief Scale, they found that

Fathers’Grief
637
there were no gender differences in couples who had lost an infant with
major congenital anomalies 6 months prior. However, subscales showed
that parents do not grieve in the same way or over the same duration.
Schwab (1992) looked closely at the effects of child death and gender-
specific patterns of bereavementonthe parents’marital relationship. She
foundthat fathers were concernedand frustratedabouttheir wives’grief,
whereas wives were angry over their husbands not sharing their grief.
This ledto atemporary halt incommunication, a loss of sexual intimacy,
andgeneral irritabilitybetweenthe spouses.The couples withdrew from
each other at various points intheir bereavement, either because of their
own intense bereavement or out of a desire to avoid increasing their
spouse’s pain. Kavanaugh (1997) supported these findings and found
that the fathers who felt concern for their wives coped by keeping busy
as opposed to their wives who coped by talking about their loss.Thomas
and Striegel (1993) similarly foundthat fathers grieved for their wivesby
trying to‘‘hold it together.’’Perhaps consistent with men’s lesser desire to
talk about theirloss, Murphyet al. (1998) foundthat fathers who had lost
children were less responsive to a 10-week broad-spectrum intervention
and showed no immediate benefits of treatment. Kavanaugh (1997) spe-
cifically asked subjects why they felt there were gender differences in be-
reavement when an infant died. The most typical reason the subjects
gave was that societal expectations for the typical male role interfered
with the father’s response to the loss.
Lang and Gottlieb (1993) looked at grief following the death of an in-
fant as a function of marital intimacy.Within the group of fathers, more
intense grief responses were associated with lower ratings of emotional,
social, sexual, and recreational intimacy with their wives. Fear of se-
paration or divorce was associated with more intense grief for fathers.
Zeanah et al. (1995) used the Perinatal Grief Scale to examine the grief
reaction 2 months after perinatal loss. For fathers, less ego strength, less
social support, and more stressful life events were correlated with signif-
icantly higher self-reported grief.
This study was pursued to enhance the research on men’s bereave-
ment experience and to serve as a companion piece to the former study
of maternal responses to the loss of a child with a developmental disabil-
ity (Milo,1997). Six questions guided the research:
1. What is the subjective emotional experience of fathers who have
lost a child with developmental disabilities, and how is it unique?

638
J. D.Wood and E. Milo
2. How do fathers who have parented a child with a severe develop-
mental disability and then lose that child manage to cope and
make sense of their experience?
3. What strategies do they use to cope?
4. What variables may account for individual differences among the
fathers?
5. How do fathers’responses differ from mothers’as reported by Milo
(1997)?
6. When a child with a developmental disability dies, what can
healthcare professionals and specialists in death and dying do to
help fathers cope in an optimal way?
Method
Participants:The Fathers
Eight fathers were recruited to participate in the study. Three of the
fathers had participated in programs of The National Fathers Network,
a support organization for fathers with children with special needs.
Three men were recruited by letter because their wives had partici-
pated in a similar research project. Two men were referred by those
aware of this project. The men, willing to speak about their experience
in the context of a study, may not truly represent those who are not yet
ready to share their story. Five of the subjects lived within a large, me-
tropolitan area with excellent social and educational services available.
Two subjects lived in a small town in an agricultural area and one
lived in a rural area. There was diversity in the fathers’ages, socioeco-
nomic status, diagnosis and disabilities of the child, age of the child at
death, and period of time since the child’s death. Significant in this
sample, all of the fathers had similar family structuresöall were mar-
ried with children.
Abriefintroductiontothefathersandchildrenisbelow. Allnamesand
identifying information have beenchangedto preserve confidentiality.
Ron’s son, Jacob, was born with microcephaly, a seizure disorder,
agenesis of the corpus collosum, and lissencephaly, with attendant deaf-
ness and blindness. He lived for 721 months. He was repeatedly hospital-
ized and died in the hospital. Ron is married and has a 5-year-old
daughter. Jacob was his second child. He and his wife have decided to
have a third baby.

Fathers’Grief
639
Peter’s first-born daughter, Katie, was born with no noticeable devel-
opmental delays. She was diagnosed at about112 years with epilepsy and
hypomelanosis of Ito, the latter resulting in severe mental disabilities.
Katie died on Christmas Eve, when she was 612 years. She fell off the
bed while napping and landed in apositionwhere she could notbreathe.
Peter is married and has two more daughters, ages11and 9.
Rob’s first son and second child, Jonathan, was born with develop-
mental delays, seizures, and vision problems. He was not clearly diag-
nosed, although cerebral palsy was suggested. He lived for 10 months.
He was repeatedly hospitalized and died in the hospital. Rob is married
and has a teenage daughter, a son, and twins, who were born after
Jonathan.
Gary’s daughter, Jessica, had multiple severe disabilities. She died at
age16 from complications from chicken pox. Gary is married and has a
grown son.
Don’s daughter, Diane, was 5 months old when she died. She had lis-
sencephaly, a severe brain disorder. She died in the hospital after being
on life support. Don has two other daughters and is married.
Scott’s son, Chris, was born with cerebral palsy and severe cataracts.
He died when he was 312. Scott is married and has a five-year-old
daughter.
Carl’s son, Max, was diagnosed with cerebral palsy, spastic quadri-
plegia, and seizures. Max was repeatedly hospitalized. He died during
the night at age 12. Carl and his wife were on vacation and Max was
with a respite provider when he died. Carl is married and has another
son.
Brian’s daughter, Ann, was severelydisabledbyanoxia atbirth, due to
her umbilical cordbeing around her neck. She died at age 7, while inthe
care of a respite worker. Brian is married and has two sons who were
born afterAnn.
Measures
This study integrates qualitative and quantitative measures, a semi-
structured, open-ended interview and the Grief Experience Inventory
(GEI) respectively. Much of the current research regarding parental
loss of a child and adjustment to parenting a child with a disability
uses interviews that are later analyzed to determine common themes
(Affleck & Tennen, 1991; Helmruth & Steinitz, 1978; Jost & Haase,

640
J. D.Wood and E. Milo
1989). An in-depth interview that explores the personal, highly mean-
ingful, and individual experience of fathers is apowerful wayof develop-
ing an understanding of the phenomenon.
The GEI, while suffering from some psychometric limitations, is one
of the few standardized, quantitative measures for bereavement. It was
chosen to parallel the Milo (1997) study on mothers. It was used to com-
pare the fathers within our sample, to compare the fathers with the
mothers in the Milo study, andto other bereaved parents in the research
literature. The GEI is a 135-item self-report inventory used to assess an
individual’s grief experience through a 12-scale profile. The validity
scales include Denial, Atypical Responses, and Social Desirability. The
bereavement scales include Despair, Anger, Guilt, Social Isolation, Loss
of Control, Rumination, Depersonalization, Somatization, and Death
Anxiety. Several populations (including a reference sample of parents
whose children died from various causes) have been used to determine
the GEI’s reliability and validity.The GEI is usedto compare the experi-
ence of bereavement among bereaved individuals as well as groups
(Sanders, Mauger, & Strong,1978).The GEIscales are expressed as stan-
dardTscores with a mean of 50 and a standard deviation of 10.The lar-
ger theTscore, the greater the intensityof thebehavior measuredby that
scale.
Procedures
Each father was interviewed one time in his home or in a professional
office for112 to 2 hours.The interviews were audiotaped and transcribed.
Each interview beganwith an open-endedquestion, allowing the fathers
to talk freely about the life and death of their children and ended with
more specific questions. Generally, the interview followed the develop-
mental line from the child’s birth, the diagnostic process, parenting is-
sues, and then the circumstances and responses to the child’s death.
An original set of questions was generated from the literature and
from the parallel project with mothers who had lost children with
disabilities (Milo, 1997, in press). In the qualitative research tradition,
questions were added and refined as themes began to emerge from the
interviews.
At the close of the initial interview each father was asked to complete
and return the GEI. A mean composite score was computed for each of
the 12 subscales of the Grief Experience Inventory for the seven fathers

Fathers’Grief
641
who returned the survey. These mean scores were compared with the
mean scores of the reference group of bereaved parents. (See Figure 1.)
A score was determined to be noticeably different if it was equal to or
greater than one standard deviation from the mean for the fathers in
the study or the parental reference group.
Similar to the mothers, the fathers reported that they enjoyed the in-
terview. They welcomed the opportunity to talk about their children
and their experience. They often asked about the progress of the study
and what we were hearing from the other men. Differing from the
mothers, they did not resist the use of an objective measurement tool.
This was reflected in the return of all but one completed GEI. (When
this one was not returned, we tried to contact the participant but were
unable to locate him.)
When the themes were developed and consolidated, we invited the
subjects to attend a focus group. Four of the eight fathers chose to attend:
Ron, Peter, Rob, and Brian. The inability of other fathers to attend was
due to geographical distance or a family commitment. We presented
what we believed we had heard and asked for their feedback and ela-
boration. The fathers were intensely engaged with each other during
FIGURE 1 Grief Experience Inventory Profiles for Bereaved Fathers and Mothers of
Childrenwith Developmental Disabilities anda Reference Group of Bereaved Parents.

642
J. D.Wood and E. Milo
discussion. They questioned and challenged each other’s perceptions.
Each father explicitly stated that he found it was helpful to talk with the
others. Each father was given a copy of the first draft of this article and
was invited to review it privately and return to us with comments. The
last draft was also mailed to participants seeking their review and feed-
back.The manuscript was refined in response to their suggestions.
Data Analysis
The interviews were audiotaped, transcribed, and analyzed using con-
stant comparative analysis (Glaser & Strauss, 1967) and a synthesis of
other procedures outlined by Miles and Hubermand (1984), Strauss
and Corbin (1990), and Glesne and Peshkin (1992).The transcripts were
divided into meaning units, approximately 476 lines each. Codes were
derived inductively and then tested by applying them to uncoded proto-
cols. Not all of the originalcodes survived: Some were collapsedand new
ones emerged, overriding the original ones. The final codes emerged
from developing and revised a coding system to categorize the themes
based on the following: (a) grief responses, (b) recovery and healing
processes, (c) changes to the self, world view, and priorities, and (d)
perceived gender differences. We looked for relationships among the
themes: for example, the connection between the mode of death and
the recovery process, the grieving process and spirituality, and the con-
nectionbetweenthe severity of dailycaregiving challenges andthe sense
of loss and relief.
The fathers’stories were viewed within the research literature’s theo-
retical frameworks of bereavement, parenting a child with a disability,
and the psychology of men.We wanted to reach the core issues and gen-
der-based similarities and differences in fathers’grief when a disabled
child died. Each author read and coded each transcript independently.
Reliability in applying the coding system was assessed and interrater
agreement was high. Substantial differences of opinion were resolved
through discussion of the transcript data. Recursive text analysis inte-
grated the raw data, ongoing generation of hypotheses and interpreta-
tions by discussion between the authors, combined with feedback from
the participants. This resulted in further refined data analysis with the
goal that, true to the tradition of qualitative research, the stories
would speak for themselves and we would be accurate listeners and
interpreters.

Fathers’Grief
643
Results
In analyzing the GEIdata, the fathers’mean results were comparedwith
the mean of the reference group of bereavedparents (Sanders et al.,1978)
andtothemeanofthemotherswhohadlostchildrenwithdevelopmental
disabilities (Milo,1997). (See Figure1.) The fathers did not differby more
thanone standarddeviation fromeitherof thesetwo groups onanyscale,
although there were some slight differences. The fathers, as a whole,
scored slightly higher than either of the two comparison groups onAtyp-
ical Responses and somewhat lower on Rumination, Depersonalization,
andSomatization.Withinthefathers’group, therewerenoclearpatterns.
This echoed the variability in their narrative responses.The fathers, as a
group, gave the impression of less consistency in experience than the
group of mothers, who showed high consistencyof experience.
There was significant diversity among the fathers’stories andthe sub-
sequent reported changes. Despite the diversity, several key areas of
focus did emerge even if their reported experience was dissimilar. The
differences in experiences did not appear to be related to the severity of
diagnosis or how the child died. The fathers more consistently consid-
ered their ways of grieving and coping to be reflections of who they al-
ready saw themselves to be, rather than attributing enormous personal
change to the events surrounding their child’s death. Personal change
was more related to their child’s being born and the subsequent losses
related to disability rather than to death.The following themes emerged
in the transcripts of the interviews and were revisited in the focus group.
Some of the themes were simply validated by the focus group, while
others were clarified and some new ones added.
Disability and Death:‘A‘ Double Loss’’
Several fathers describe the sense of normalcy and anticipation of their
child during pregnancy. The world seemed innocent and predictable.
There was no reason to expect anything other than a healthy baby and
the joys of fatherhood.They described their hopes and dreams.This was
especially true for the menwhowerehaving their first son.These dreams
and hopes for the future were shattered when the men learned of their
child’s problems. Many of the men described this as a‘‘double loss.’’
First, the men suffered the ‘‘big blow psychologically’’ when they
learned about their child’s disability. The time of diagnosis symbolized

644
J. D.Wood and E. Milo
the initial, metaphorical ‘‘death’’of the expected healthy child. Second,
these fathers then experienced the actual death of their child.
Ron described with melancholy the special things he anticipated and
the experience of losing his son twice.
Seeing fathers with their younger sons: just starting off onjourneys into different
things, learning experiences, learning to ride a bike, playing catch, baseball,
playinggolf, tennis, school, whatever, allthose new thingsthat are newand fresh
and exciting to a kid, things they share with their fathers . . . that I will never
share with my son. That was harder than burying him in some respects . . . But
that loss occurred almost the first day after we got the finding. . . . I lost that
particular future with my son at that point.
At the time of birth, Don describes a foreboding sense of the future: Con-
sciously or subconsciously, there was something wrong with the child . . . I have
watched newborn animals and newborn people and this one was different.
The process of diagnosis was not always clear. Some fathers went
through a more gradual unfolding over several months or even years to
understand the extent of their child’s disability or to find a diagnosis.
Rob describes the gradual learning as something ‘‘that just sends waves
of fear throughyou.’’Whilebelieving hehada healthybabyandenjoying
the early period of raising a child, he was also identifying problems at a
more gradual pace. ‘‘Finding out’’ was neither marked by a dramatic
moment of diagnosis or obvious impairment. The men’s response to the
diagnosis ranged from,‘‘I was very, very angry,’’ ‘‘Why me? Why is this
happening to me?,’’ ‘‘I went to bed and just cried and cried’’ to a strong
sense that things like this just don’t happen to‘‘families like us.’’
Whyme?Whynotsomebodyelse.Imean,therewassomeironytoit. . . . Iwasata
tournament andone of the guys I hadn’t seen forquite some time had hada child
whowasjustdiagnosed, so I wastalkingandthinking,‘Thatpoorbastard.Thank
God mylifeis charmedandthings likethisneverhappentous!’Twomonths later
Jacobisbornandwe’regoingthroughthesamethinghe’dgonethrough.
For the fathers who identified the diagnosis as the moment of most
intense grief, the death of their child was a second blow and, although
expected, a double loss. Although this did not diminish the pain of their
child’s death, it allowed time for learning and growth during the period
of caring for their child, as suggested by the comment,‘‘We were con-
vinced that it was God preparing us for what was going to happen.’’Just
as one father reached some peace with the diagnosis, his grief was re-
kindled at the time of his daughter’s sudden and unexpected death:

Fathers’Grief
645
IttookmesixyearsfinallybeforeIsaid,‘‘Geethisisstupid,letKatiebeKatie,letme
just enjoy heras her dad rather thantry tobe her therapist, her teacherand stuff.
Sheisgoingtobethiswayandaccepther.’’Ihadjustgottenthereandshedied.
This raises the question of whether knowing that a child’s life expec-
tancy is shorter eases a father’s pain. Katie was expected to live a full life
span, as wasJonathan.Their fathers dealt with an additional element of
shock, whereastheotherfathershadsomeideas, basedondiagnosisorill-
ness, that they would have less time with their children alive.When the
children were less aware of their environment because of the severity of
disabilityorbeingayoung infant, themenwereverydirect in statingthat
theyfelttheirlosswaslessthanthelossofanolderormoreawarechild.
Some of the fathers articulated a sense of relief or freedom whentheir
child died.Two fathers particularly highlighted that aspect of their grief.
Theywouldnothavetoexperiencetheirownfurtherdifficultyandsuffer-
ingofraisingachildwithspecialneeds.Othersfoundreliefinthefactthat
theirchildwouldnothavetoendureapoorqualityoflifethatwasaresultof
discriminationagainstorlackofservicesforpeoplewithdisabilities.
One father described a wonderful sense of freedom:
Evento this day Ican’tbelieve it. Idon’t have to change diapers any more. Idon’t
have to worry about her any more. I don’t have to plan things in advance. I am
free now.That still makes me feel a little guilty.
Active Coping:‘‘IJust Got Right In and GotTo It’’
The fathers’primary strategy for coping and recovery from their griev-
ing was consistent across the circumstances of diagnosis, parenting, at
the time of death and bereavement. They took an active approach to
coping.
We didn’t know what to think about this problem and at that point I just had to
drive around . . . Ididn’t want to notify the family by phone, I wanted to drive to
each location to stay busy and have something to do. And it was hard, I mean,
stopping in the course of driving to locations, having to stop beside the road you
know, rather than drive through tears.
In response to the disability and the death of their children, fathers
wanted to find something to do. They wanted to take action and keep
busy with tasks. All of the fathers found something active as a means
for coping as the time of diagnosis.These activities included researching

646
J. D.Wood and E. Milo
medical literature,‘‘becoming the scientist,’’ focusing on work, engaging
in sports, as a means of coping with their grief at the time of diagnosis.
This also occurred later, at the time of death. This is in contrast to the
mothers who had coped primarily by seeking social support and talking
about their losses (Kavanaugh,1997).
At the time of diagnosis, men felt profoundly overwhelmed by their
feelings. Fathers coped by staying actively engaged in work and moving
into more intense involvement with parenting. Brian reflected on his re-
sponse to learning about his daughter’s problems,
Iguess I just didn’t think about it, I just got right in and got to it. My wife didthe
same thing . . . the issue immediately became toboth of us to get in and work as a
team and do the best that you can and you make it happen.
When there was no clear activity to pursue, then they experienced a
flood of emotion. Rob illustrates the immensity of his feelings when he
could not rely on activity,
I remembered being pretty much overwhelmed by the whole thing . . . my mom
anddadcame over to help me feed him. I just couldn’t do it, Iremember I was in
tears, and I don’t know why, maybe from the standpoint of overwhelmedness.
The future that they had anticipated was now gone. In its place
loomed an unpredictable life span with their child that was marked by
uncertainty and fear:
Fear that I think was a kind of lack of control and lack of ability to think . . .
Maybe there is something wrong; but what and how can it be fixed . . .just be
fixed and done away withbecause youwant your childtobe perfect.
Similar active coping strategies were used at the time of death. Each
father describedwithvividdetailthe logistics of ‘‘makingarrangements.’’
This appeared to be an activity that the fathers could engage in to ease
emotionalpain.Again,thethemeemergedofneedingandwantingtostay
busy. Ron described the irony in needing to saw down a fallen tree inthe
yardonthemorningofhisson’sfuneral.Scottrecalledmeticulouslychoos-
ingfuneralreadings,music, andcreatingfuneralprogramsandpoetry.
It was important to Ron and Don to donate their child’s retinas and
corneas. This required additional activity that the fathers managed.
Although it was not directly stated, indirectly they spoke of this giving
their child’s life meaning. Each of their children died from profound
disability prior to a year old.

Fathers’Grief
647
Don reported his sense of relief that when given facts, he could move
toward a decision and action, as difficult as that decision was:
Iam extremely bitter and always will be. Iallowed my innocence and naivete to
overridemybetterjudgment . . . Isaid,‘‘Youfolks(studentsobserving)canleave.’’
They did. He told us what the diagnosis was, what the prognosis was. We
cried . . .wesupportedeachother.Thenwedriedourtearsandsaid,allright,when
canwedisconnectthechildfromlifesupport . . .We’llbethere.Itisourstodo.
Jonathan, Chris, Jacob, and Jessica had numerous hospitalizations.
There was enormous anxiety not knowing how a hospital visit would
end.While a hospitalization had begun like all the others, there was al-
ways the possibility that it couldendby‘‘walking out of the hospitalwith
an empty car seat.’’
When fathers were not present at the time of their child’s death, they
questioned whether their actions would have saved the child. Although
Ann’s father was not present at the time of her death, he so deeply trusted
the respite worker that he was certain he could have done no better and
was not left with lingering anger or guilt (‘‘it was her time’’). In contrast,
Max’s father was left with bitterness that the respite worker may have
acted irresponsibly. He reports still feeling bitterness anda lackof resolu-
tion about the issue of blame.
Even when a father took appropriate action to prevent his child’s
death he was left with a feeling that his actions had, in the end, been
ineffectual,‘‘Did Ido everything Icould?’’Katie’s death was sudden, un-
expected, and accompanied by much chaos. Her father administered
CPR and medics making resuscitation attempts did not revive her. Peter
reported enormous guilt until the medical examiner said,‘‘It just hap-
pened, it was completely out of your control.’’ The simple comment
‘‘helped lift the burden off my shoulders.’’
Although fatherswereunableto controlthe occurrenceofdeath, hold-
ing,carrying,andattendingtotheirchildwasanactivewayforthefathers
tocontinuefatheringandclaimtheirchildastheirown.Severalstatedhow
critical it was to them that they, rather than a coroner or medical profes-
sional,physicallymovedtheirchild’sbodyafterdeath.Theintimacyofthe
moment withtheir deadchild was shared in a‘‘kiss on her forehead’’or in
‘‘holdingherforhoursjustsobbing.’’
The coroner was going to go up there and put her in a little bag and I said,‘‘No,
no, Iam not going to do that. I will go andpick her up and I will carry her out to
your vehicle. I am not going to have you put her in a bag and carry her out.’’We

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did everything together with Ann, we brought her into this world together . . .
andwe wantedto do itourselves . . . we washedanddressed herand we criedand
laughed . . . Between me carrying Ann down the stairs to the time in the funeral
home was the most healing time because again it told me how much you don’t
know in life and how short life is and how at the blink of an eye it’s gone and it’s
yesterday’s news.
Fathers’Isolation:‘‘Select Fraternity’’
When you are burying a child, not many people have gone through that . . .
Putting your kid in the ground, I mean, that’s a pretty isolated or cocooned
experience.
All the men experienced isolation.‘‘People just didn’t know how to
deal with it.’’ The disability created a sense of a‘‘special club’’ initially.
Now their children’s deaths just set them further apart in a‘‘select frater-
nity.’’ The hurt for many fathers came from the disappointment that
they experienced when the friends and family closest to them did not
understand. Some men also told stories of extraordinary support from
unexpected sources. Four reported that their wives sought counseling,
whereas only two fathers reportedthat they found it helpful.Two fathers
told how they could manage their strong emotions in their work and
home lives, but while they were alone in their cars ‘‘on the bridge the
feelings would break through.’’ Rob describes the profound sense of
aloneness:
After they leave you, there you are in your own home and you are the man, you
are it, you’re in charge, nobody else is going to do it, everything that has to be
taken care of for a child like this. I wasn’t wishing for help, but you just feel, it’s
this aloneness.
Relationships with Professionals:‘‘Just Give ItTo Me Straight’’
How the fathers learned about their child’s problems was a dominant
theme in the stories. Professionals who were straightforward and honest
were valuedover professionals whotriedto protect the parents or protect
themselves from the implications of the child’s disability. In the focus
group, one father stated,‘‘I just wanted to deck him’’ in response to a
doctor’s delivery of a prognosis about his child. This response met with
enthusiastic agreement and similar emotional experiences from the
other fathers.

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649
I pushed and pushed.The geneticist didn’t want to say it . . . I said,‘‘What is the
diagnosis going to be here?’’ She said ‘‘Your daughter probably won’t ever walk
or talk or feed herself, be potty trained or dress herself’’ . . .Idon’t remember too
much after that except I felt real fuzzy in my head.
All of the fathers described an intense need for the facts of the sit-
uation. They wanted doctors to present the facts and medical opi-
nions or belief, even if it was premature or uncertain. They did not
seek comfort or want ‘‘sugar coating.’’ This makes sense in light of
wanting to find something to do or some action to take. The fathers
held in high regard the doctors that went the extra mile in telling the
details and in listening to the parent’s concerns. Ron described his
gratitude to a pediatrician who knew how to ‘‘ask coded questions’’ of
the specialists in order to reach a sense of the reality of the situation.
Don and Peter illustrate the bitterness felt when they could not get
clear information or when information was blatantly withheld from
the family.
He knew. They knew. And I was not given the opportunity, nor was my wife
given the opportunity to know at a critical point and we were not able to make
decisions. You get little bits and pieces over time from the doctors of what the
condition really is of the child . . .everybody only knows their little piece and
they’re not willing to cross the line and say . . . finally, he was good about tell-
ing us she is severely damaged, these are the issues at hand, and we don’t
know.
At least two fathers would have made decisions to not prolong life if
they had understood the extent of their children’s disabilities. They
shared this value with their wives but were met either with a lack of in-
formation or direct opposition from medical personnel when confronted
with life-prolonging decisions. Ron says,‘‘We decidedto allow himto live
the course of his life as his body was built to live.’’
In comparison to the mothers’stories, relationships with professionals
were much more central to the fathers’stories. All of the fathers said that
they felt very angry and helpless. Anger withthe professionals may have
served to externalize their sense of frustration and helplessness.The dis-
ability and death did not offer easy answers for what to do or what ac-
tions to take. Anger at professionals provided some focus to the anger
and helplessness of grief. This is consistent with other findings that
fathers often report feeling that someone must be‘‘punished’’or to blame
when their child dies (Drenovsky,1994).

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Role of Father:‘‘Papa Bear,’’‘A‘ lly on the Frontier,’’Seeking Distance
We asked the fathers to help us understand their daily lives with their
children.We wanted to know what it was like from waking in the morn-
ing throughthe middle of the night, caregiving responsibilities.This was
partially directed by our curiosity about the emptiness left in their fa-
mily’s life by the child’s death when the child required an intense daily
caregiving routine. We noticed three themes or models for the father
role: protector, ally, or seeking distance from the family and the pain of
loss.
We were also curious about the fathers’ self-perceptions of their role.
All of the men we interviewed were involved in parenting responsibil-
ities. During the focus group, several commented with near reverence
about their wives.They described great respect and appreciation for the
daily hard work of caring for a disabled child and their wives’abilities to
manage that part of family life. Simultaneously, several expressed com-
fort and satisfaction in the traditional role of provider and protector:‘‘I
was her protector and her guardian,’’‘‘Ithink it was really enough for me
to think that I was trying to take care of my family.’’Brian described his
role as ‘‘Papa Bear’’ for his disabled daughter. Peter saw his daughter as
‘‘our whole life . . . everything was Katie.’’
Gary had a different experience. Rather than protector or provider,
he saw himself as‘‘partner.’’His professional goals changed dramatically
as a result of parenting a disabled child. He moved from the academic
realm into the activism and advocacy of disability law. He and his
daughter were a team:
She was my ally. I thought about the issue and am I just exploiting her for my
own purposes and decided that was not true. It’s ok to have a child be your ally
on the frontier.
Brian spoke to a different sense of the emotional connection between
a seriously disabled child and the parent:
I believe that parents and children have an interconnection that is God-given
and that connection allows the parent to be able to see the needs of the child. If
you truly get beyond all the other stuff you can really start looking at the child’s
eyes and figure out what they are needing.
There was another side to the father7child relationship. Some men
describe the distances that they put between themselves and their baby,

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651
in order to alleviate the pain of the diagnosis. All of the children in this
group had profound disabilities, some with very short life expectancies.
Distancing from the babies may have served as a kind of anticipatory
grieving. If the father didn’t get too attached, the impending early death
may hurt less. Some of the children who were older were very difficult,
either in the intensity of their need or in their behavior. Carl, whose son
would scream inconsolably, illustrates this.
Ialways hadthe feeling that Max didn’t like me, that there wasn’t a real connec-
tion between me and him . . . I always thought at the time that we didn’t have a
bond, more or less between father and son. What was nice about the father’s
group is that it forced me to bring Max and spend more time with him and we
startedtobonda little more. It wasn’t just momthatcould make him stop crying,
could love him and hold him and make him stop crying. I could do that too.
Celebratingand Normalizing the Child:‘‘Let’s Have aWalking Party’’
Throughout the stories of daily life, a recurrent theme emerged about
appreciating the selfhood of the child. No matter how small the gesture,
each father identified the features or memories that made his child un-
ique.We were especially interested inthis partof their storyas itcounters
parents’perception of public sentiment that the death of a disabled child
is somehow less than the death of a healthy child. Regardless of severity
of the impairment, every father described the special memories andjoys
inherent to his child’s spirit or personality. For children with severe dis-
abilities and limited ability to respond, the men found the sensitivity of
communicating‘‘through her eyes’’or viewing his child as the‘‘poet’’and
‘‘partner’’ in a spiritual sense of a life together.
She had a real infectious smile and she would giggle and people would just
laugh their head off . . . She liked pretty basic things really: food, music and
water . . . She would crawl in and crawl out of a small, inflatable swimming pool
we had in ourbackyard, crawl in andcrawl out, lie down forawhile and rest and
crawl in and out some more. She would just go and sit on the sprinkler in the
backyard and play in water for hours.
Katie’s family held a‘‘walking party’’ for her when she took her first
steps. Scott appreciated Chris’s spirit in how Chris responded to music
and to his sister. Carl recalled how he felt that an‘‘intelligent kid’’ was
lockedinsidehissondespiteasevereregressionfollowingaseizureepisode:

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J. D.Wood and E. Milo
I shaved my beard off and I went in to say ‘‘Hi’’to Max and he just looked at me
and started smiling and almost laughing. It had been almost a year since he had
smiled at all.You’d get a little chuckle when his eyes would light up and he would
smile. I mean, it was incredible. He had such a nice face.
All of the men reported a desire to normalize their family lives during
their child’s life and after death, by maintaining their work lives and the
siblings’ lives. Several fathers described how repeated hospitalizations
significantly disrupted their work lives. Many found that work was a
welcome relief from the stress of their child’s needs. Gary sometimes in-
cluded his child in his work life by having her present when he spoke on
behalf of rights for people with disabilities.
WithJessica we always pushed the limits of normalization because that was the
ideology that was associated with the civil rights movement for people with dis-
abilities and so we always focused on making sure we kept her at home.
Includingthe disabledchildwiththerestofthefamily wasadominant
theme, as opposed to protecting the siblings and keeping their activities
separate.‘‘We wanted her to experience everything, skibob, sledding, a
full life.’’ Sibling relationships were critical avenues for maintaining fa-
mily stability. All of the fathers saw themselves as protectors of a‘‘normal
life’’ for the siblings. Peter expressed concern in telling how his typical
child would pretend that she had‘‘special needs.’’He expressed apprecia-
tion for her special bond with her disabled sister and how ‘‘they would
sneak out of their bedroom at night to play together in the family room.’’
But he alsoworriedthat perhaps special needs hadbecome toomuch of a
focus in his family.The menwhohadolderchildrenperceivedtheirolder,
typical children’s lives as important motivators to continue recovering
fromgrief. Lifewiththeirotherchildrenwasan indicatorthat‘‘lifemoves
forward’’evenwhen‘‘you feel everything shouldjust stop.’’
Stability of Identity andWorldview: Hunters and Ministers
The fathers’stories were told with two distinct styles.These two distinct
styles correlated with the language and metaphors the fathers used and
theactivitiesthey usedto cope. Onegroupspokemore ofthe solitudeand
stoicism with which they experienced their grief.The other group spoke
more of the communitythat supportedthemandhelpedto create amore
publicmeaningoftheirchild’slifeanddeath.Thefirstgroupusedtheme-
taphor of a‘‘hunter’’andthe secondgroup usedthe word,‘‘ministry.’’

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653
Fathers who used the metaphor of ‘‘hunting’’ told their stories with a
directness that was almost scientific or clinical in its coolness. Don held
his handcarved bow and described his orientation to life:
Life may be a precious thing, but life is renewable resource. There is a point
where one can fully or substantially enjoy life and there is a point at which one
can not. Forananimalthat isthe point at which it needstobe terminated . . . She
was born with a degenerative disease, she died.
Ron summed it up as,‘‘Life is a crapshoot.’’While it is possible to mis-
read such directness as cold or unfeeling, the hunter’s style coupled di-
rectness with a reverence for and hidden intimacy with the spirit of the
animal.Whentheir children died, this group of men went about making
arrangements to the tone of ‘‘it’s all logistics,’’ just doing what needed to
be done. But their own deep pain was private and reserved for solitude:
We went to a remote cliff, a craggy little point . . . tookthebag out, ran my hands
in it (the ashes) and looked at it . . . it was snowingand windblowing and we just
threw it.We made sure there was nothing left in the bag because I have a thing
about that, letting everything escape from the soul.
These fathers who grieved as ‘‘hunters’’did not articulate significant
personal or spiritual changes but said that their experiences had rein-
forced their more fatalistic views of life. Ron says
You are born and you spend however long you are in the world like a pinball,
bouncing off different things, different decisions, and somewhere along the line,
or call it a spaceshiptraveling through space, sooner or later you are going to hit
a meteorite and you are going to blow up. Life is a series of meteorites going by.
These fathers identifiedthemselves as‘‘cynical.’’However, inthe inter-
actions between the men and the interviewer (and wife or child present
during the interview), it was clear that a deep tenderness and sensitivity
lurkedbeneaththe surface of cynicism.These fathers, in particular, iden-
tified realism, a gritty honesty, and adventure as strong values in raising
theirlivingchildren.Whenasked,‘‘Howhasthis impactedyour spiritual-
ity?’’ these fathers said they did not believe in that. They perceived per-
sonal changes as related more to life phases than any particular event.
The fathers who used the metaphor of ‘‘ministry’’ described their
grieving as more emotionally expressive with a community.This public
aspect of grieving brought comfort, whereas hunters found public

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expressions and community more irritating than helpful. Comfort in
community was experienced by a strong investment in the funeral de-
tails. For example, Scott and his family designed a musical tape record-
ing of their son’s favorite music. The funeral rituals gave expression to
their religious faith and meaning to their child’s life. This group of men
included those who also went on to become advocates or spoke of want-
ing to be in ‘‘ministry’’ to others who had gone through what they had.
This group was active in the Fathers’Network, law, or their church.
These fathers, whose grief evolved toward a sense of ‘‘ministry,’’ com-
mented more frequently about their personal changes. Brian stated,‘‘She
made me who I am as a father.’’ Peter reflected on significant personal
changes:
I am more compassionate . . . more reflective. She has made me understand the
simple things in life: water, food, and music.That’s it . . . She has made me think
with my heart, not with my head. Sowhat if it doesn’t make sense. It makes sense
in your heart . . . Life is what you make it.
The fathers whose grief evolved toward ‘‘ministry’’expressed more
similar changes to the mothers in worldview and priorities:‘‘life is short,’’
‘‘others’ expectations and opinions are unimportant,’’ and ‘‘be kind.’’
Brian says that his daughter ‘‘made us grow tenfold.’’ He learned ‘‘that
people are a strange breed’’ when he heard rude comments regarding
his daughter’s disability anddeaththat impliedthat her deathwas some-
how less than another child’s. Peter described a‘‘richness’’ to his person-
ality and inner emotional life that he now attributes to the experience of
his daughter’s disability and death.
The men’s spirituality was, in general, more reinforced rather than
radically altered. The fathers who reported no shift in spirituality also
reportedthattheyhad no sense ofspiritualityor faithprior totheirchild’s
birth and death.When spirituality was an important aspect prior to the
child’s death, it remained important. Two men felt that the birth and
death of their disabledchild was apart of ‘‘God’s plan’’for their family,‘‘I
had faith that God has a plan for us, and that’s just fine.’’ They reported
finding enormous relief and comfort in their faith. Rob said,‘‘I have a
strong faith, I believe in God, Ibelieve in Christ, and Ibelieve He istak-
inggoodcare of usandJonathan.’’Their viewson spirituality were strong
prior to their child and were reinforced by the comfort that they found.
One father who had been involved in civil rights prior to the birth of his
childcontinuedto focus his lifeworktowarddisability rights, specifically.

Fathers’Grief
655
He cited his religious beliefs as the foundation for his work prior to his
child, and following the birth and death of his child.
Only one father reported experiencing a significant shift in his spiri-
tuality. Peter experienced a shift from believing that ‘‘what happens is
God’s will’’to:
Your life happens, God is there, you have many choices in life and he is there to
help you. But when bad things happen it is not because God wanted it that way.
It’s because sometimes bad things just happen.
Gender Impact on Marriage:‘‘IDidn’t Grieve Less, Just Differently’’
Research literature of the death of a child has recently shifted away
from concluding that the death of a child increases a couple’s chances of
divorcing (Lang & Gottlieb,1993; Rando,1983).This study supports the
more current findings (Schwab, 1996) that many marriages remain
strong. These fathers reported that their marriages were strong prior to
their children’s deaths and that the death contributed to making them
more deeply committed to each other. It is important to note that this
group is self-selected and does not include some of the father’s responses
noted in Milo (1997). Initially, two fathers stated it had significantly
strained their marriages, but they came through the difficult period by
acknowledging that theyandtheir wives were grieving in different ways.
It seems most likely that this group result was due to the self-selection
process of participating in the study. Fathers who had divorced were dif-
ficult to recruit to be participants.
One of the themes that emerged in the focus group that was not evi-
dent in the interviews was the extent to which the men grieved for their
wives. Five fathers stated that they felt the loss of their child was much
harder on their wives than on themselves.They attributed this partially
to the closeness that exists when the mother does the primary daily tasks
and to a belief that there was an inherently closer relationship between
mother and child.The men’s focus on grieving ‘‘for’’their wives is an an-
gle that warrants further examination and holds significant clinical im-
plications, particularly for marital therapists.
During the focus group there was a vigorous discussion about the
roles and responsibilities of husband and wife. When the majority of
the group reported idealizing their wives, Ron articulated his feeling
of isolation when being the ‘‘at-home’’ parent for his child. He re-
ported that he struggled with expected gender stereotypes and that

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he would escape into work and his wife would carry the emotional
response to the death. He stated that he felt he had shouldered the
emotional process of the family, resulting in a severe depression and
lengthy recovery process. He encountered a lack of acknowledgment
by helping professionals that, because he was a man, he would ex-
perience the grief so profoundly.
The other at-home father specifically stated in written commentary
that he also did not share idealized feelings toward his wife. He de-
scribed being deeply affected by his daughter’s death and feeling a sense
of responsibility. He had, unknowingly, exposed her to a virus that ulti-
mately caused her death. He acknowledged feeling responsible, as op-
posed to feeling excessively guilty. Overall, guilt was a less prevalent
experience among fathers than among mothers.
During the focus group, we also discussed research findings that
men grieve ‘‘less.’’ These fathers adamantly rejected this notion. They
felt they had grieved significantly differently than their wives. It is sig-
nificant that the fathers, with the exception of Ron, rarely expressed
feeling discounted or ignored in their grief. Given the paucity of litera-
ture on men’s bereavement, we expected that a culturally based disre-
gard for men’s grief would be a stronger factor in their experience.
One father wished that his child had had a stronger impact on him,
that he ‘‘envied my wife’s sense of ministry’’ following the death. How-
ever, he also noted that one of the lasting impacts of his son’s life was
in ‘‘protecting me from a worldlier lifestyle.’’ Three fathers expressed
difficulty with the idea of having more children because ‘‘maybe there’s
feelings so buried that I would be afraid to rekindle the pain of that
much love.’’ Three fathers had children following the death of their
child.
Healing:‘‘I’ll Never Forget’’
Regardless of coping style, the fathers did not want their children to be
forgotten. Several fathers said that their feelings of grief don’t change
over time, but that the emotional intensity decreases over time.
Our big fear was we don’t want to ever forget him, we don’t want his immediacy
to fade, we don’t want to forget the details about him. Maybe it’s callous, not
callous, but an inevitable consequence of life that as you go on, old feelings are
replaced by new feelings. Then you might encounter something that brings
everything to the surface.

Fathers’Grief
657
Some of the things that‘‘bring it to the surface’’are seeing fathers with
sons, seeing a girl in awheelchair, music or movies, and recalling special
moments. All of the fathers reported enjoying being able to talk over
memories for the purposes of this research. It is one of the ways in which
their children are remembered.
All of the fathers had special memorials to their children. Several
expressed a fear that the memory of their child would be lost, and‘‘that
dead is not forgotten.’’ This seemed to be related to disability, as if the
public would remember a disabled child less. Some fathers described
rituals such as birthday cards, hanging Christmas stockings, and visits
to the cemetery as ways of keeping their child’s spirit alive. Gary de-
scribed how very much aliveJessica remains as a‘‘silent partner’’ in his
work. Peter stated that he really wanted us to know that,‘‘I really miss
my daughter a whole lot.’’ Katie has a star named after her.
During the focus group, Ron spontaneously raised this question
with the other men: How do you remember now? The men moved
from the stories of disability and death toward how they view emo-
tional health and peace in the present. There was a wide range of ex-
periences: Mother’s and Father’s Day cards, taking balloons to the
grave on birthdays, and continuing to bake birthday cakes. Some fa-
milies maintained these rituals just following the death and some con-
tinue them into the present. Each family had settled into rituals of
remembrance that felt comfortable to them.
All of the fathers reported having reached a place of peace, despite
struggles with bitterness, anger, and depression. Simultaneously, all ex-
pressed moving back into those intense feelings of grief at times. Healing
had many faces. Some found healing by maintaining connections with
the community of fathers of children with special needs or by social acti-
vism and advocacy in the disability community. Simply talking about
their children was reported as healing by several fathers. For others,
healing was found in the solitude of hunting or playing golf. One father
said his sense of healing inthe present is illustratedby a quotation posted
on his family refrigerator:‘‘I’ll never forget but that doesn’t mean that I
always have to remember.’’
Discussion
Give sorrow words.The grief that does not speak; knits upthe o’erwrought heart
and bids it break. (Shakespeare, MacBeth)

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J. D.Wood and E. Milo
All of the fathers who participated in this study felt that their loss was
different than other fathers who survive the death of a child.The roots of
these differences lay in the initial losses related to disability preceding
the loss of death. We concluded that there were four common themes
about fathers who lose a child with special needs: (a) fathers use an ac-
tion orientation for coping with painful feelings and to prevent feelings
from overwhelming them; (b) fathers experience deep feelings of isola-
tion, based first on the child’s disability, then on losing the child through
death; (c) fathers reported that the object of their grief was often seeing
their wives in pain and acknowledged significant differences in grieving
that they perceived to be based in gender differences; and (d) fathers
reportedconsistency in self-identityandworldview that influencedtheir
ways of grieving and healing, unlike the mothers who reported signifi-
cant changes in identity and world view.
Research on families with children with special needs indicates that
the more a father is involved inthe healthcare of his child, the higher the
level of family functioning, resilience, and marital satisfaction (Frey,
Fewell, & Vadasy,1989). Professionals need to help dispel the myth that
men grieve less for their children by inviting men into conversations re-
garding their children’s disability, death, and their own subsequent be-
reavement periods. Acknowledging the differences in the ways that
mothers and fathers grieve the loss of a child with special needs at diag-
nosis and at the time of death has significant implications for clinical
practice, social policy, and future research.
Clinical implications for professionals charged with the care for chil-
dren with special needs include facilitating and maintaining a connec-
tion to the father by providing straightforward information, inviting
questions and discussion, and acknowledging the difficulty of the situa-
tion. Fathers did feel that their grief and isolation were different from
other fathers who had lost a child. Discussion groups targeted specifi-
cally at this population may be very helpful. The fathers reported that
they enjoyed the opportunity to meet each other in this study, even if
they had never participated in a support group during their bereave-
ment. Several fathers indicated a desire to stay connected to each other
and often inquired about the experiences of other fathers during the
interviews.
For therapists and counselors, eliciting the stories of grief from
men must include an open invitation to all ways of coping that are not
self-destructive. The fathers had many stories to tell, but there was an

Fathers’Grief
659
undercurrent of concern that they would be judged by professionals that
they were not really grieving if they chose not to talk about it.The pop-
ular idea of a step-by-step grieving process causedconcern for some men
who felt that were weren’t grieving ‘‘properly.’’ Maintaining respect for
an action orientation toward healing challenges the bias of the counsel-
ing disciplines toward ‘‘talking it out.’’ Many of the men did not feel the
need to talk about their experience, simultaneously they all reported en-
joying talking inthe study. Perhapsthis wasbecause it was not framedas
‘‘therapeutic’’ but as an active research project that was of use to other
families andprofessionals.The project itself was an actiontotake toward
continued healing, helping others, and honoring their child’s life.
Because their children’s disabilities demanded overwhelming daily
tasks, the fathers felt an increased need for time as a couple. Public fund-
ing andtrainedproviders for respite care was (andcontinuestobe) a cri-
tical supportforoptimalfamilyadjustment. Fathersusedtheir workplace
asameansof respitebothpre-andpost-death. Grantingequitable oppor-
tunities for mothers and fathers to make use of family medical leave and
bereavement leave is an important part of allowing time for healing. It
also protects marriages from the strain of individuals distancing from
each other when they are in such need of each other. Social policy rele-
vantto familyleave, respite funding, andclinicaltrainingof medical pro-
fessionals wouldbenefitbyconsidering the emotional needs of fathers.
Research questions that have been raised by this study include taking
a closer look at gender differences, particularly as men are increasingly
primary caregivers or equal partners in parenting. Could it be that pre-
viously reported gender differences are more socially constructed than
based in the reality of the men’s emotional experience? As the research
on men and grief expands, it would be interesting to conduct a cross-
generation inquiry of men’s experience of grief: How is it different or
similar to their fathers’experiences? This would illuminate men’s emo-
tional experience in light of the social changes toward increased toler-
ance of disability and differences and movement toward a greater
permission for men to articulate their stories of pain as an aspect oftheir
lives. The psychologically minded solution of ‘‘talking it out’’ may be
grounded in differences across generations. Did the men who had a
model of open emotional expression with words have higher levels of
optimal adjustment following bereavement?
Research with couples should continue with regard to the real and
perceived impact of gender differences of grief.The concept of‘‘grieving

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for my wife’’warrants further illumination. Is this a displacement of the
husband’s feelings or a distinct, additional loss that he experiences? Dis-
cerning the elements of a marriage that help it withstandenormous grief
and stress may clarify the path for marriage therapists working with be-
reaved couples. Research on couples that identifies specific strategies to
enhance individual coping, maintain optimal levels of connection and
distance, and allow for communication that contains intense feelings
associated with grief, will inform effective clinical practice. Mental
health professionals and healthcare providers can help families identify
these issues proactively and anticipate difficulties that may lie ahead.
Anticipation, preparation, and active engagement decreased feelings of
helplessness and empowered men in their role of father.
In general, there was a lack of social support for the fathers.This can
be addressed by continued efforts by professionals to include fathers in
the care of their children, including at the time of death. The fathers’
stories tell us that the deepest moments of pain, intimacy, and healing
were found when fathers were full participants during the life and death
of their children. As professionals, we must honor those moments and
continue to be receptive and empathic to the broad range of men’s grief
experiences.
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